Patience

You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.  -Maya Angelou

There is so much on my mind and so much I could write about.  My current daily world involves a lot of patience and wondering.  Parts of my recent post, Living Life on the Edge, has hit home sooner than I would like to admit.  

A couple weeks ago, while on my "relaxing getaway", I ended up in the emergency room.  I had 2 days of relaxing enjoyment beforehand.  The physical symptoms were sudden and unexpected.  I was visiting an amazing fellow sarcoma survivor friend in New Hampshire.  Her daughter, her and I were sitting and enjoying dinner and some ginger tea when I started coughing/choking on large amounts of sputum.  At first, I wanted to believe that maybe it was leftover from a mild cold I had the week before.  But there were large amounts of  junk coming out of my mouth and reminded me so much of when I'd had a fistula in January.  Then came the odd squeaking and wheezing noises inside my chest from where my lung used to be-things did not feel right.  I was hoping never to hearing the crying sound coming from my chest ever again.  I took a shower to try to calm down and think through what to do.  One of my fears has always been to be on vacation and have to go to another hospital, where no one knows my medical history or anything about me (I know that I have always been somewhat coddled where I am treated).  I called my husband and he said I should call my surgeon.  The doctor called me back immediately and said I needed to get some tests done at a local hospital and see if I could make it home but we were all still thinking that hopefully something else going on.

It was what I think of the typical ER experience being like: long and slow waiting all night but not enough time in between to actually sleep at all.  Ironically, I had never been to the ER (because of my aforementioned doctors, any hospital stay meant I was whisked through to a private room when needed).  It was a teaching hospital and so with my extensive history, I was quite the spectacle for the residents and senior doctors.  I was different and fun at first-a patient with rare issues who knows what they are talking about in depth (even having copies of x-rays and blood counts on my phone).  As the night wore on and they realized something was really wrong, the mood changed.  They seemed to want to get rid of me and send me back to my regular doctors.  We had lots of mixed messages throughout the night of internal bleeding, pneumonia, bronchopleural fistula, etc.  In the end, I was cleared to fly home with uncertainty about what was going on and a CD of my x-ray and CT (but I knew...I knew in my heart it was another dreaded fistula...as my doctors had told me before-you just know when you have one because the symptoms are so unique). 

Getting home was overwhelming to think about: I had 2 flights, luggage, had pulled an all-nighter, was coughing up large amounts of gunk and so weak.  My truly amazing husband actually flew from St. Louis to New Hampshire, drove an hour to where I was staying, got there at midnight and flew back with me the following day.  

Since getting home,  I have had some testing done where the fistula and infection causing the infection have been confirmed.  This was truly something that should not have happened...everything had been done to prevent this, but me being typical me, it somehow became possible and happened.  So, now it is up to my doctors to get creative once again...I feel for them as I know my options are wearing thin.  I also trust them enormously to be honest with me about whatever the future may hold. 

In the meantime, I don't feel horrible for the most part, I lay low, I read, I hang out with Gabe and a few friends and family and pray and wait and prepare for whatever comes...

Rachel

How I am Surviving with a Window in My Side for Months

In honor of my 11 year cancerversary of having no cancer found in my body, I decided to think of ways that I have stayed positive and made it through this year with my "window".  Some of these are things I found helpful during my many years of cancer treatments and other things are newer to this particular situation.  There are definitely ups and downs and when I feel good, I try to make the best of it!  I'd love to hear about ways that have helped you through obstacles in your life!

How I am Surviving with a Window in My Side for Months (and Daily Doctor Visits):

1. Smoothies: Jamba Juice and St. Louis Smoothie are favorites- whey protein shakes with fresh fruit (helpful with healing and on days with low appetite)
2. "Breathe" or Lung Items: "Just Breathe" ring, lung jewelry, various comfy lung and “Breathe” t-shirts
3. Lung Art and Inspiration: the wonderful art everyone made me has been finding homes in our loft-many of them on top of our kitchen cabinets.
4. Support: visitors, dinners/lunches/dates with friends, calls, cards, texts, emails, Facebook messages, etc.  It’s been lovely to reconnect with people and meet new friends along the way!
5. New Experiences: going to various events when feeling up to it such as Tea 101, lecture about Frank Lloyd Wright's stained glass, book signings, craft fairs, simulation of walking through someone’s life in another country, nutrition and cooking classes, conference about cancer research, Professional Bull Riding, Monster Trucks and the “salty snack” research study (in which they paid quite well)!
6. Music: live concerts and listening to/from doctor appointments and at home.  For concerts there has been venues big (Scottrade, Hollywood Casino Amphitheater) and small (Ready Room, World Chess Hall of Fame, Firebird, Twilight Tuesdays at the Missouri History Museum, etc.) and all types of music-rap, jazz, country, folk, alternative, rock, German electronic, acoustic, pop, etc.
7. Trips: since it’s hard to travel (no flying; dressing changed every day) my medical team and family figured out a way for me to go on a 1-night trip to Indianapolis.  It was amazing-filled with live music, yummy food, shopping, a cute B&B and catching up with amazing people!  Gabe and I also were able to do a 1-night staycation at a nice hotel in St. Louis, have some delicious food and feel like we were on vacation.
8. Exercise: weekly training (walking) for a 5k (maybe a 10k) with a group of employees from the hospital where I’m getting treated (Females in Training).  It’s amazing to feel athletic and stronger than what is going on and feeling like a fighter! I have also dabbled in yoga, MELT Method (for help with chronic pain) class weekly and some Zumba.
9. Medical Staff: amazing and kind people who go above and beyond-from secretaries to nurses to PAs to doctors to home care nurses-all top notch!
10. Faith: prayers and positive thoughts from others has been immensely comforting.
11. Naps/Rest/Massages: I probably don’t do any of these enough but they're essential!
12. Positivity: knowing one day it will end when I have the next surgery and hopefully be able to move on.  Also trying to look at what is good about the situation and not focus on what could be potentially not be going in a favorable way.
13. TV Shows and Movies: though I don’t watch that many, they are nice for times I need to lay down and relax. The Emperor of All Maladies was on PBS during a week I was pretty sick and gave me something to look forward to each evening.
14. Art: engaging in art in my studio or in the sketchbook I sometimes carry to my appointments while waiting.  I’ve also enjoyed making art for others during this time and have been to a few art galleries including a neat show at the Bruno David gallery showing art by Max Starkloff.
15. Gratefulness: that most days I don’t feel too bad, the horrendous side effects of my infections are pretty much gone and that I’m tolerating the long-term high powered antibiotics pretty well; for my amazing husband, family, friends, God, my medical team; for having a husband that works and can support me and also has amazing medical insurance through his company.
16. Outdoors: trying to soak up the nice weather when possible through meals outdoors, walking, outdoor concerts and rolling the windows down in the car.
17. Reading: I have read about 4 books since this began and was gifted an amazing box of new books from a high school friend who works for a publisher.  I have also flipped through some magazines along the way.  They are also helpful for when I’m waiting at the doctor’s office.
18. Comfy Couch: the lounge part of our large sectional has gotten a lot of use during this recovery-it’s right by large windows with a great view and usually is very quiet and peaceful.
19. Food: it’s been fun to try new places especially places from Ian Froeb’s Top 100list in the Post-Dispatch!  Some days it's a highlight of the day to eat something delicious or have a dessert to look forward to.
20. Giving Back: it’s amazing how I’ve been able to be there more for people in my life right now, as a few people are going through their own serious issues-medical and otherwise.  I have also made some artwork for charitable causes, modeled in a charity fashion show and spoke to a couple of groups about my experiences.